To share what I’ve learned about having and fighting cancer, I’m repeating this blog now because I wrote it two years ago today, sitting in the hospital bed with my laptop the day after I had surgery for cancer.
The medical community still won’t go for “cancer free,” saying I need three more years before it will make that declaration and I’ll statistically be back with the general population for likelihood of cancer. But I do have the label of NED — no evidence of disease.
It’s worth repeating this post because I keep hearing from medical professionals that women are not heeding the early warning system this cancer provides. Too many cancers don’t give us a good chance to fight it early. Endometrial cancer does. Don’t ignore it!
- If you or woman you care about have any unscheduled vaginal bleeding get it checked.
- If your doctor doesn’t take it seriously, go to another doctor.
- If you have any doubt, read the comments on the original blog here. People died who didn’t need to die. Don’t let this happen ever again.
I was very fortunate that my primary care physician took it seriously from the start. (I was the one scoffing — oops.) Because of her alertness and insistence, I had treatment for Stage 1A/Grade 1 cancer. Not Stage 2, 3, or 4. Not Grade 2 or 3. And because of that, I didn’t need chemo or radiation.
Yes, I griped about not healing faster. (I’m told I was unrealistic. Harumph.) It bugged me that I couldn’t do what I’d always done. Still, I knew I was fortunate.
And now I can look back and see how far I’ve come.
Here’s the original blog:
What I Did on Christmas Vacation
and why it might be important for your health.
I had surgery for endometrial cancer on Monday, December 28, 2015.
I won’t make you wait for this happy ending. The initial pathology report says I’m all clear after the surgery. Yes, there’s the final pathology report still to come. Also, I’ll need ongoing exams and tests (darn it!) to check for recurrence of endometrial cancer, but this was the best possible outcome of this procedure.
Why it might be important to you is that I’ve learned a whole lot about this since September. And one of the most important variables in beating the most prevalent type of endometrial cancer is catching it early.
Back in September, at a regular checkup with my doctor, as I prepared to leave, I said, “Oh, yeah, and I’ve had some bleeding.”
“Oh, yeah?” She was definitely not amused. Also wasn’t impressed when I said it was very light, very sporadic, maybe four incidences over six to nine months. It had seemed so innocuous I hadn’t really paid attention.
That was the start. I was sent for a transvaginal ultrasound and another test in October. They showed thickening of the endometrial stripe (I had no idea I had such a thing, much less that it could thicken) and what were thought to be fibroids.
Because of that thickening, I was sent for an ob/gyn biopsy. This biopsy checks only a tiny portion of the uterus, so it can confirm cancer but not rule it out. My biopsy was clear, which was good, but not definitive.
The next step was a D&C in November for a more extensive biopsy. No evident signs of cancer during the scope. However, they found a polyp, removed it, and sent it to pathology.
The doctor called a couple days later than I’d expected her to call with the pathology report and said there wasn’t a definitive answer. Some things indicated cancer, but other markers weren’t there. A second local pathologist came to the same conclusion. So they were sending the sample to a specialist at Mass General in Boston, which would take another week.
I asked the doctor to let me see the preliminary report while we waited. It included the word “suspicious.”
To this point, I was absolutely convinced that each of these steps would be the last one. I felt absolutely fine. I have no know family history of endometrial cancer. But seeing that word “suspicious” made me think, uh-oh.
So when the specialist came back and said the sample met the criteria for cancer, I wasn’t totally surprised. The specialist also wrote that the removal of the polyp might have removed all the cancer “but one cannot guarantee it.”
When it comes to cancer, a nonguarantee was not going to cut the mustard. The medical advice was a hysterectomy. So after talking to doctors (including a wonderful friend of the family), researching, juggling schedules with family and such, the surgery was set for Dec. 28.
I’m writing this as I’m in the hospital a second night (hope it’s the last one! I was told to expect 2-4 nights in the hospital. I plan on being on the short end.)
There are a few things I’ve learned that I hope might help someone out there.
- If you have any “unscheduled” bleeding, tell your doctor immediately. Light, sporadic, unimpressive – doesn’t matter. Report it. I was fortunate that my doctor jumped on it. Not all do. So you might need to be assertive. If you are not menopausal it’s more complicated. Do not let that stop you – no one knows your body better than you do. When something’s “off,” new, different, report it and pursue it.
- Do NOT think that feeling good means you don’t have an issue. Generally, you don’t feel bad with this cancer unless it’s progressed way past where you want it to be.
- Recognize that the tests are going to be weird, uncomfortable, and unfun. Get them done anyway. Do them quickly.
- You’ll need help. After anesthesia, such as for the D&C, hospitals won’t put you in a taxi. (I thought that was a great solution. The ob/gyn said she would not put me in a taxi with someone I didn’t know while still loopy from anesthesia. Okay, that was fair point.) Instead I needed family help. And more help for this surgery. Lots more. This is not easy for me. (I’m told my first spoken phrase was “Do it my ownself.”) But you do what you got to do.
- Information is power. Find out what you need to know from good sources. I recommend:
Mayo Clinic — Including this succinct list of symptoms of endometrial cancer:
- Be as proactive as you can be in talking with the doctors and nurses. Your understanding of and comfort with what’s happening is vital. Some of the doctors didn’t seem to be accustomed to my level of question-asking – I figure I’ve softened them up for all the patients who follow <wg>. The vast majority of the nurses were terrific, giving lots of information and answering lots of questions. Remember, though, that for doctors and nurses this is everyday stuff – the terms, the sequence, the protocols. You need to remind them that for you it is not everyday. Don’t let them rush through what’s familiar to them but leaves you confused or uncertain. Ask until you understand the answer, even if that means asking over and over.
- Do not assume that because you have no family history or the major indicators that you’re exempt. By those criteria I wouldn’t have it. But here I am. And so are a lot of other women.
- Getting this early is absolutely vital. Unlike too many cancers, endometrial cancer frequently gives us early symptoms. When nature gives you an early warning system, you cannot afford to ignore it. Caught early the prognosis is very good. But I’ve talked to doctors who have treated women who let it go for years – years! — or until they were bleeding profusely. Don’t. Do. This.
- The diagnosis of cancer is NOT the bad news. Seriously.
A friend asked me after the pathology report came back as endometrial cancer if I was upset. I wasn’t happy, but honestly that was mostly because all the tests and procedures had messed with my writing schedule big-time and I realized that surgery was going to knock that schedule for a major loop. (Which explains why the release of LAST DITCH has been pushed back from November to February.)
I also realized that not knowing would have been so, so, so much worse.
Whatever is going on in your body – cancer or otherwise – is already there. The diagnosis doesn’t change that, but it does give you a chance to DO something. To take action. To fight.
That’s what I’ve done. I hope it’s what you’ll do if you need to.
I also hope you’ll spread the word about the symptoms of this cancer so more women have the opportunity to fight it when the fight is winnable.
Good health to all of us in 2016.
P.S. I DID get out of the hospital after two days. Home now, learning not to lift anything over 5 pounds for a spell. Ah, but the laptop’s only 3 pounds! ‘-)